Parenting on the Spectrum

Cholesterol: upping the dose

2011-07-03T23:21:00.001-04:00

Tomorrow we begin upping the dose of cholesterol for BigL. I hope to see some results soon, but maybe I need a reality check on how much progress we will see short term.

It's not your appendix, but...

2011-07-03T23:16:00.001-04:00

While undergoing treatment and tests for pneumonia and kidney infections, and to rule out appendicitis...doctors stumbled upon something far worse. I have severe fatty liver (non-alcoholic). There are lots more tests being run to determine cause, but they feel confident obesity is my issue. The good news is that it can be reversed.

I am low carb now, in addition to lower fat and low sodium. I thought reading labels for my kids multiple allergies was eye opening...wow, this fat/carb/sodium watch has blown my food perception apart in a matter of days. This isn't going to be a walk in the park... Unless its like Gotham park.

I will start sharing recipes now that fit my diet, and continue to share those that fit the kids diets. One big happy family of foodies, one day at a time.

Cholesterol Day 1

2011-06-19T11:37:00.001-04:00

Today is the start date for L's cholesterol treatment. No, my 9 year old doesn't have high cholesterol. It's actually the opposite. He has super low cholesterol levels...too low according to Dr. B

I could pretend to be crazy intelligent and explain all the reasons low cholesterol is bad... But Generation Rescue did such a good job in this article that I will defer the explanation to them.

I hope to report tremendous progress while on this cholesterol supplement from New Beginnings.

Here's to hope!

Easter Sunday and a birthday

2011-04-25T21:39:00.001-04:00

The boys and me

Birthday Boy - 8 yo!

9 yo - He took a picture of himself...

A day at the Zoo

2011-04-09T20:42:00.000-04:00

Jacksonville Zoo and Gardens 4-9-11

Bed before 8 o'clock

2011-04-07T19:54:00.000-04:00

You know I am in pain and seriously fatigued when I go to bed voluntarily before 8 o'clock pm. I hope this weekend offers some rest. What are your plans for the weekend? Is your weather starting to feel more like spring and less like the walk in freezer?

Tomorrow is report card day for my kids...does that bring up a bit of dread in anyone else? You never quite know what you may see, even if you are on top of things. As much as I look smashingly forward to report card day for my neuro-typical child, I have even warmer feelings for the report card that comes home with my some with autism. Yes, the teacher always puts a note on there that what really matter is that his IEP goals are being met...but, seeing C's and D's and U's doesn't make me feel all cozy inside. And seeing "below grade level" next to every subject - yeah, that's not so friendly either. It's more of a smack in the face of harsh reality.

Since I need that restful weekend so that my fibromyalgia flare-up can hopefully "cease and desist", I am going to put off looking at the report cards until Sunday night. Sometimes, avoiding reality is the only way...even if it is just for a little while.

Gone with the Wind?

2011-04-04T16:55:00.001-04:00

When we got home from Logan's speech appointment, we found a limb bigger than him where our car is normally parked!
I only got one picture because as he was trying to hold it, the wind kept knocking it loose. Safety first!

- Posted using BlogPress from my iTouch

Fernandina Beach

2011-04-03T12:41:00.001-04:00

We enjoyed a day in Downtown Fernandina Beach. We had a blast on World Autism Awareness Day (once we finally got out of the house). The pictures are random and willy nilly silly - but I think you'll enjoy them.

Downtown Fernandina Beach

April 1st!!!

2011-03-30T23:19:00.001-04:00

Friday is April 1st!!!
Yes, fools day to the masses...but the beginning of Autism Awareness month is also April 1st.
As a mom of a child with autism, I am very aware daily of all things autism - but this is a month devoted to educating the rest of the world about autism. Educating teachers, preachers, church family, the bag boy at Publix, and the peers of those with autism...so that our children are accepted and valued. It's also a time of intense prayer for those affected by autism. ChildrenOfDestiny.org offers verses and prayers for everyday in the month of April in an initiative called "Turning the Tide". I encourage you to join with me in praying not just for my son Logan, but all children and FAMILIES affected by autism.

If you have questions about autism, please ask me. I want people to know & understand. Yes, Logan is different-but is such a God given joy! Everyone that gets to know him, sees his exuberance for life.

Thank you,
Lynna Kay

Remember, kids with special needs are: "Different, not less" - Temple Grandin

- Posted using BlogPress from my iPhone

Bunk beds!

2011-02-06T21:03:00.001-05:00

It only took 6 hours to put them together....ha.

- Posted using BlogPress from my iTouch

GF/DF/Peanut Free Muddy Buddies

2011-01-16T18:47:00.001-05:00

Also known as "monkey munch".

Thanks to my friend Erin for turning me onto this recipe! Some twitter friends wanted the recipe...so here it is :)

*9 cups rice or corn chex
*1/4 cup butter (I use fleishmans unsalted margarine since it is dairy free)
*1/2 cup Sunbutter (or soybutter)
*1 cup chocolate chips (dairy free)
*1 tsp. Vanilla (gf)
* 1 and 1/2 cups powdered sugar

Melt sunbutter, butter, chocolate chips, and vanilla in microwave. Mix well until smooth. Pour over chex cereal and stir gently to coat. (I put mine in a gallon zip bag and tossed it!) Add powdered sugar and shake in a container to coat well.

These turned out so yummy! I had been longing for the peanut butter/chocolate combo but due to serious peanut allergies...couldn't. Sunbutter taste differently alone but once mixed with all the other ingredients the Muddy Buddies tasted just like when I used to eat peanut butter :)

I hope you enjoy!

- Posted using BlogPress from my iTouch

We can all relate...

2011-01-15T05:58:00.001-05:00

My husband has a new one-liner that he came up with, I think we can all relate.

"It's a shame when common sense must be approved by an idiot." - Joe Parker

Do you ever feel this way? At work? At your child's IEP meeting? About the government?

All of the above at some time or another!!

:) what do you think? He's gonna have it put on coffee mugs, lol!

- Posted using BlogPress from my iTouch

New Year, New Recipes

2011-01-02T14:07:00.000-05:00

One of my resolutions this year, is to try new gluten free-dairy free recipes. I started off on the right foot yesterday with a corn dog recipe for lunch, and a Sweet & Sour chicken recipe for dinner. Today, I made crepes for lunch and filled them with different things depending on the kids preferences.

My thoughts thus far on the recipes:
1. Corn Dogs
http://afewshortcuts.com/2010/09/gluten-free-corndog/

I chose this recipe mainly because I love using the Gluten free Bisquick, it makes like easier. I followed the recipe exactly. I used almond milk for our dairy. For some reason, my batter was way to thick. Next time maybe I'll add a little less cornmeal or gf Bisquick, because even though I
dried the hot dogs, the mixture was too thick and grainy and wouldn't stay on the bite size pieces well at all. Fortunately, the finished product was still tasty. 8 hots dogs = 32 mini corn dogs = all gone. My husband said the only thing he'd change aside from making the batter stick better, would be to increase the sugar just a bit - he prefers his corn dog to be sweeter. Also, we are not savvy with frying things, and our entire apartment filled with smoke making this dish. Not sure if that is normal or just something we did wrong. Thank goodness the weather was lovely and opening our windows and doors was an option. We'll definitely try this recipe again.

2. Sweet & Sour Chicken
http://hubpages.com/hub/Gluten-and-Dairy-Free-Sweet-and-Sour-Chicken

I chose this recipe because I didn't need to have the added step of frying chicken with batter. I used 2 bags of instant white rice, which yielded quite a bit of rice. I probably should have doubled the sauce recipe, because I like my sauce to rice ratio to be higher. This recipe was delicious. I did make a substitution for white rice vinegar, because I thought I had it and once I started the recipe realized I had run out. So I used apple cider vinegar instead. I think it still turned out delicious. My boys both ate it up! I did too, went back for 2nds. Next time I will try with the white rice vinegar and add some more veggies, like red pepper along with the green pepper and onion...and maybe snow peas too!
I am making this recipe again soon.

3. Crepes - pick your filling
http://www.bettycrocker.com/recipes/strawberry-banana-crepes/beb17f18-b84d-48b9-b06b-d677430fe66e

I realize the recipe calls for regular Bisquick...but, I was desperate after searching for crepes using gf Bisquick and coming up empty. So I followed this recipe exactly - but used GF Bisquick in place of regular Bisquick. I only have one good thing to say about these crepes, my younger son loved them. My 8 yr old and I however, found them yucky. Specifically, I found the batter to be too thick, had to add about 1/2 c. more almond milk to get it thinner. Once cooked, it was heavy, like a pancake...not like a crepe should be. They didn't fold over well either, they broke. I was really wanting crepes like I used to get in the "Italy/France" area of EPCOT. I cannot get those crepes out of my head...and these, were just blah. No flavor, no lightness.... I will not be making these again (even if the 7 yr old did like them, there has to be something better out there).

Now, I want to tell you an addendum to the Corn Dog recipe above - it was a most pleasant surprise to have batter left over and we did not want to waste it. I had been reading about funnel cakes and corn cakes and so I got the bright idea to just spoon the batter into little cakes into the hot oil. We fried up some corn cakes, and then put them into a brown paper bag filled with powdered sugar and cinnamon and shook it up! These were such a delicious treat! Had I had jam, I would've served them with that also. Don't make them too large though or the inside won't cook all the way through. ;)

Some of the new recipes I am trying later in the week: GF/CF Meatballs in BBQ sauce served with rice; GF Scones; GF/CF Salsa Crockpot Chicken with Black Beans & Rice; and I'm still looking for a dessert to try. I'm also making my "doctored" spaghetti sauce, which Prego Traditional for the base.

Perhaps I'll be able to make some photos of the ones I try this week and share.

Be blessed, and enjoy your Sunday!

Sneaky Mommy

2011-01-01T10:42:00.001-05:00

I have found the perfect way to hide BigL's new medications, well 3/4 of them. Udi's gf white bread, toasted, with peanut butter and jelly. I grind the medications up and mix with peanut butter. I feel genius.
However...the 4th medicine must taste bitter or something because no matter what I mix it with, he throws it up immediately.

The flip side of this post, is that after 2 weeks of medications we are not seeing a good difference. If I could figure out how to get him to take the 4th medicine maybe we would turn a corner.

Any thoughts on hiding medicine? He cannot swallow pills, and there isn't a liquid form.

- Posted using BlogPress from my iTouch

1-1-11

2011-01-01T01:15:00.000-05:00

Happy New Year!
May you be blessed and filled with love & joy,
From our family to yours.

Super K

Big L

and me, aka: mommy, mama, Lynna Kay, "that mom", @LynnaKay

Give me pickles!

2010-12-29T11:58:00.001-05:00

Thanks to Wendy's omitting a very important ingredient (pickles) from my son's burger patties (no bun, no cheese!) we are having a rough day. All morning long, all I have heard (over & over) is, "they didn't put pickles on my burger patties!"

People...you never know how important leaving off a topping is to a kid with Autism... Just give us the darn pickles!

- Posted using BlogPress from my iTouch

Pray for Logan

2010-12-22T20:42:00.002-05:00

This week, we found out some bloodwork results from Logan's doctor. Logan has an overgrowth of yeast in his body. Not just on his bottom in the form of a rash but in his brain and other organs. We have to put him on two different medications to work on treating this, one for a few months at least and the other for 10 days. The medication he has been on has not been working. Yeast in this capacity can affect behaviors and the intestines (gut). We also found out that his bowels have basically fermented (due to yeast). So in addition to being gluten free and casein free (dairy) he has to be on a low carbohydrate diet....high in protein and healthy fats. The yeast feeds on sugars and carbs and we have to starve the yeast as much as possible while he is on the meds to give it the best chance of going away. We also found out that he has extremely low cholesterol. Good cholesterol is what our brains use to grow and keep us on an even keel. So we have to get Logan to eat lots of healthy fats, and are trying to get a scholarship for some cholesterol pills...to up his good cholesterol. Some of the medications he is having to go on are bad for your liver in large or extended quantities...and Logan's liver function is already impaired somewhat. SO...we also have to start supplementation to give his liver support so that it isn't damaged by these drugs. A lot of this is going to be trial and error finding the right doseages of medications that work for him. I feel so bad for my baby (yes, I know he is 8 but he is my baby). He already has so many limitations health wise and to add more medications and more supplements...and more dietary restrictions - it just sucks. I am having to create a spreadsheet to keep up with it all. Aside from me keeping the doctor informed of what the meds are doing, if they are working or not...we go back in February for more blood to make sure of his liver panel and see if the cholesterol is going up. Thank you for praying - pray specifically that the place that makes the cholesterol medication will bless us with it free or majorly discounted. Also pray that the treatments work and we don't have any side effects or damages. Pray that Logan gets better.

Logan was a Cookie

2010-12-21T21:49:00.000-05:00

He was a cookie in his school play, "The Gingerbread Man".

It was a non-speaking role but he was cute!

A Social Network Christmas

2010-12-21T21:38:00.000-05:00

More MOSH - Planes, Big Mouths, and Nature

2010-09-30T21:42:00.000-04:00

Museum Of Science and History (MOSH)

2010-09-30T21:39:00.000-04:00

Field Trip!
Logan's class went to the museum and got to see an exhibit on the human body and on dinosaurs. The dinosaurs were robotic, and very lifelike. Logan and his friend Ernest (they call each other 'cousins') enjoyed the dinosaur exhibit the best.

Gluten Free, Dairy Free Lemon Bars w/glaze

2010-08-11T14:44:00.000-04:00

This recipe is so yummy and the end result never last very long...so nice and light and summery.

For this recipe, I adjusted the original Bisquick Lemon Bar recipe to be gluten free and dairy free. I also adjusted some of the amounts for the filling so that you got more lemon gooeyness :)

Ingredients:
1 c. Bisquick
2 tbsp. powdered sugar
4 tbsp. firm butter ( I used Fleishman's unsalted bars - they contain soy so if you are soy free, use your own butter)
1 and 1/2 c. sugar
2 tbsp. Bisquick
4 eggs
3 tsp. grated lemon peel
4 tbsp. lemon juice (fresh is best)

Crust:
Mix 1 cup Bisquick and the powdered sugar. Cut in butter until crumbly. Press in ungreased square pan 8x8x2 inch. Bake @ 350 for about 10 minutes or until light brown.

Filling:
Mix remaining ingredients, pour over baked layer. Bake @ 350 for about 25 - 35 minutes or until set and golden brown. While warm, loosen edges from sides of pan. Spread with glaze. Cool completely, cut into bars.

Note: I've also used a round pie pan and cut into triangles instead of bars. That is what I did for the picture. I also doubled the glaze recipe the 2nd time I made it and it turned out better, so I will post the doubled recipe below for the glaze and if you want less, 1/2 the recipe.

Glaze:
1 c. powdered sugar
2-3 tbsp fresh lemon juice

Mix powdered sugar and lemon juice together until smooth. Pour over lemon bars and spread evenly.

**Alternative: You can also use orange juice and orange peel in substitute for the lemon ingredients and have an orange bar!

Mommy Rhapsody

2010-06-25T15:22:00.002-04:00

Mommy Rhapsody from Church on the Move on Vimeo.

Summer - Week 2

2010-06-22T19:17:00.002-04:00

I won't lie. This summer has not gone according to my master plan.

In my head I had orchestrated this very organized, routine driven summer. It was full of activities, arts & crafts, mini-field trips, vacation, and educational tidbits hidden deftly in "fun".

What really happened was this: I got sick (again). Not just any sick either. Tonsilitis (again) and an upper respiratory...then an allergic reaction to antibiotics. Add to that the steroids I was on sent my blood pressure through the roof and I ended up in the ER. I have to go see an allergist, a cardiologist, and I saw the ENT today. The ENT was the bearer of bad news...tonsils must come out (sooner rather than later). That's about a 2 week recovery!

I am sadly one of those people that tends to be so gung ho for my plans that when they don't go accordingly, I crash and burn. I don't know how to jump into my plan now. I feel as if two weeks of summer have been wasted - and we only have 10 weeks total.

This chaos is of course playing out in the lives of my boys too. Their only saving grace has been that this week is Vacation Bible School and so from 9-12:30 everyday they have organization. I am hoping to capitalize on this by organizing the next few weeks before vacation with activities out of the house during the morning.

I am making it a goal to blog our activities daily - so that I have some accountability. Even if it is only a picture of us where we are! :) So starting Monday - be on the look out.

Jungle Musical

2010-05-31T20:01:00.000-04:00

Logan and Kylar did such a great job for their first grade play/musical. I was proud of both of them!

Saturday

2010-05-02T04:52:00.000-04:00

Logan mowed the grass with his daddy and had a blast!

Logan's artwork was chosen to be in the Shrimp Festival :)

10 days

2010-03-21T20:50:00.003-04:00

I am both looking forward to and dreading Spring Break. It will be lovely to have a break from the daily grind of work. It will also be nice to have my kids be home...and it will be chaos for my kids to be home. I have to figure out a schedule that fits in my much needed house cleaning and my kids play time. I have always struggled with this during the times they are out of school. I'm unsure how to keep them occupied as I clean, other than a movie or video games. I also want to plan some activities, such as the zoo and maybe even the beach (weather permitting). I will be searching for ideas on balancing housework with two active little boys running around. If anyone has some advice or schedule layouts - please leave a comment! My boys and I desperately need a routine. We thrive on routine! Without it - chaos takes over, anxiety runs high, and mommy feels like she needs to check in to the psych ward.

So in only 10 days...Spring Break. Will it break me or will we thrive and survive?

What a month!

2010-03-11T20:03:00.002-05:00

My youngest son broke his arm...in music class. He was pretending to be a tiger while they played circus and when he jumped through the 'hoop of fire' ((hoola hoop)) he landed wrong. He is having a rough time with the cast - more than your average kiddo - because of his Sensory Processing Disorder. A good day is me distracting him enough to not have whining and crying about the cast.

I had something called NoraVirus. It was terrible. Worst virus I've ever in my life had. I'd rather give birth again...it was that miserable. I'll spare you the deets but I missed 3 days of work and it ruined a weekend.

In the meantime, my hubby somehow got a sewing needle deeply embedded in his foot. *Note: I do not sew. I do not own needles. Not sure where it came from...odd. He was in the ER for a few hours. Two different doctors attempted to dig it out...but no luck. He had to go back a few days later and have surgery. He has crutches and several stitches, but he is needle free :)

To top it off...my older son (with Autism) has been totally regressing with behaviors. He even pushed another child down at school! ((Fortunately it was his brother...but still, not good)) He also left the cafeteria alone and no one even knew he was missing. Somehow it's my fault. Teacher says he knew I was working there that day and he wanted to see me. Um, hello...if he had been properly supervised by an adult as he is supposed to be...then he wouldn't have gone AWOL - do you know nothing about autism? I'm just grateful that he came to the speech room and didn't go into the traffic, construction, or through the gate into the world alone. We have a meeting tomorrow (IEP - joy) and will hash it out then.

So now you know my month so far...and scary enough - it's only 11 days in!

Pretend Play

2010-02-09T19:48:00.000-05:00

BigL is obsessed with a stuffed monkey puppet. He "feeds" it bananas, and carries him everywhere. (BigL eats the bananas). Tonight, though, I could not get him to understand that the monkey could not take a shower. "But he'll stink!" BigL tells me emphatically. I suggested he use a baby wipe to "bathe" the monkey with...which was fine until he realized now monkey is wet. He doesn't like that. So we then have a towel trying to dry off the monkey. This did not work as well as Mr. Particular would have liked, so a tantrum ensued. Long story short (mainly me trying to explain that he would dry eventually and BigL not getting "eventually")...monkey is now dry (gee that took forever!) and BigL is putting the monkey to sleep. Hope my monkey falls asleep soon too, pretend play is exhausting!

- Posted using BlogPress from my iTouch

Homework

2009-09-20T01:53:00.002-04:00

I would be interested in hearing some comments on how parents handle homework with a child that has either Autism or ADD/ADHD. We are finding it to be very frustrating due to the lack of focus.

Ideas?

Discovery Toys

2009-09-08T21:06:00.002-04:00

I have been considering becoming an Educational Consultant for Discovery Toys for quite some time now. I finally took the plunge at the end of August and I am so glad I did! Discovery Toys are great for all children, but especially children on the Autism Spectrum. BigL has never been interested in anything other than blocks and balls. I was looking at the online catalog the other night and he was so excited! He started pointing out toys he wanted and then wanted to show them to his daddy! My child is finally excited about toys! Thank you, Discovery Toys!

If you would like to learn more about the toys, shop my site, or become a consultant yourself...email me: toys4kids (at) comcast (dot) net

You can also check my site out for yourself http://www.discoverytoyslink.com/lynnakayparker

Song

2009-07-22T08:52:00.001-04:00

This is the chorus of the song in my head this morning. I think it is called "Power of Your Love" by Rebecca St. James

Hold me close
Let Your love surround me
Bring me near
Draw me to Your side
And as I wait
I'll rise up like an eagle
And I will soar with You
Your Spirit leads me on
By the power of Your love

-----
I think this is a good song for reminding us how God's love and strength can get us through the toughest times.

Rain and Rental Movies

2009-07-09T11:40:00.004-04:00

Our week has been Topsy turvey for a few reasons. First, it has rained ALL week. We've got cabin fever. We've resorted to playing baseball inside. Ahh!

Now, the problem with rentals.

The boys each got to rent a movie last week with a gift card they'd received. They were very excited to get to visit the movie store! After 45 minutes, they had each picked out their movie. ((Too many choices - next time I will pick out movies for them)). We got home, and watched the movies over and over and over. BigL had picked out a 'Doodlebops' movie. He loves that show, so he was thrilled to be able to watch them (over and over) on the DVD player. The day came, though, to return the movies. That is the definition of a rental movie. You pay to borrow it for a length of time and then give it back. (Or they charge you outrageous late fees). So that part was terrible. BigL did not (and still does not) understand WHY the movie had to go away. To him, it was HIS movie. He had it in his possession, carried it everywhere with him, and never let it out of his sight. So when the time came to take the movie back, I had tried transitioning. I started 2 days before and began trying to explain that in a few days we had to take it back to the store for other children to enjoy. It did not work. He flipped out. He had such a breakdown that my husband ended up with a finger in his good eye and the pain caused him to be writhing in pain for 5 good minutes, allowing BigL to run crazy all over the apartment. When I returned, 30 minutes later, things were just starting to 'kind of' calm down.

I'm not sure if anyone else had had this problem. I don't know if we'll rent movies again. Any suggestions from your experiences are welcome :)

GMO'S

2009-06-09T23:41:00.001-04:00

This is a priority to read! Please give the subject your attention. Thank you.

http://whattofeedyourkids.blogspot.com/2009/06/geri-brewster-on-aaems-warning-about_04.html

Fwd: lkandjp sent you a video: "JP wii hula 1"

2009-06-08T22:39:00.001-04:00

-----Original Message-----
From: YouTube Service
Sent: 6/9/2009 2:29:17 AM
To: artsymama@msn.com
Subject: lkandjp sent you a video: "JP wii hula 1"
lkandjp sent you a video: "JP wii hula 1"

	help center \| e-mail options \| report spam
lkandjp has shared a video with you on YouTube: This is awesome! JP wii hula 1 video uploaded from my mobile phone
© 2009 YouTube, LLC 901 Cherry Ave, San Bruno, CA 94066

2009-06-08T12:39:00.001-04:00

On our way to the Lake House! BigL and SuperK live in the water when we are there. Joy!
-LK-

Mommy's Been Out of Commision

2009-05-24T15:35:00.002-04:00

Something happened Thursday, and I had severe pain in my ribs. I also had a three day migraine still grinding in my head. A trip to the ER was unavoidable. My bp was high when I got there. After the pain medication they gave me it went much higher - 172/109. It was scary. I felt terribly dizzy. I also was still having pain in my ribs and head, and it had moved into my chest and neck. All the pain and bp issues was causing me to have an anxiety attack. So I got a bp pill, a different type of pain medication, chest xrays, cat scan of head, and some valium and anti-anxiety medication. That doctor and nurse were my new best friends - they made me comfortable enough (or dopey enough) to at least fall asleep for an hour or two. My xrays/cat scans/blood work came back fine. Did show I was a little dehydrated. Diagnosis was Myalgias and Migraine and Muscle Spasms. I am supposed to still be resting and taking my medications and checking my bp every hour or so. I am to follow up this week with my local doctor. Sounds like fun doesn't it?

I have two new recipes (gfcf) to try this week and if all goes well I will share them with you :)

Not many days of work left for me before summer break! Which is good - because I think I would croak if I did not know I had a nice break ahead of me.

Chicken Salad

2009-05-12T18:35:00.002-04:00

I wish this was me posting a recipe for gfcf chicken salad, but it isn't. I am asking for recipes instead. SuperK has fallen in love with chicken salad from the deli where we vacation and it is gfcf, but that is 8 hours away. Does anyone have a good, and EASY, chicken salad recipe? If it is not already gfcf, I can modify it to fit our needs.

Comment with your recipes or links to recipes below!

Thank you :)

My Mother's Day Surprise

2009-05-09T09:53:00.002-04:00

This morning I woke up to SuperK bringing me breakfast in bed! He had done it all by himself. He used the top of his 'Operation' game box for a tray. Then he put a paper plate with a gluten free Valencia Orange Cake from Starbucks in the center. He surrounded the cake with 6 marshmallows. He got a plastic cup, with a yellow straw (my favorite color) and water for me to drink. He also provided a plastic fork, spoon, and knife. Is that the sweetest thing you've ever heard or what? My other son brought me a gift into the room to open. I am proud of my boys, so thoughtful and sweet and full of surprises!

Help Wanted!

2009-05-04T15:57:00.002-04:00

This is not a job ad. Sorry!

I need help coming up with age appropriate rules for helping around house and behaviors for my two boys. BigL is 7 and SuperK is 6. If you are a reader of this blog already, then you know that BigL has autism and severe sensory processing, as well as a hearing loss. SuperK has sensory processing and anxiety issues. We have a token system to put into use where they can earn star tokens to put into their pouches. They can save star tokens to put towards 'buying' something. We increase the number of tokens they have to earn as they get used to doing more and improve behaviors to make it fit their current level. For example, BigL only has to earn 15 tokens right now due to his level of understanding the concept. As he 'gets' it, we will of course increase the difficulty to challenge him. SuperK is up to having to earn 30 in order to go to the store. We usually take them to the dollar store, or they say what they would like to 'save up' for.

I need help specifically with:
*creating a chart that will help them visually keep up with rules and chores.
*deciding on what is most important to work on right now rule wise and chore wise. I know it is good to start with a few and work up to more when they get comfortable with the system and as their age grows.

For some reason this is very difficult for me. I did not have to do this type of thing growing up.

Thank you for your suggestions ahead of time!! I'll keep you updated on how it goes.

New Rule Possibility

2009-04-23T18:13:00.002-04:00

I just had an epiphany. It happened after I stepped on a toy (for like the umpteenth time today). I thought I will start a new rule! Everytime mommy steps on a toy - it goes into time out for a week. Sounds like a good idea to me! Maybe then BigL and SuperK will pick their toys up off my floor! The only problem I see with my new rule thus far...where will I put all these toys? Cause you know it won't just be one or two - it'll be a whole slew of toys!

Any suggestions? Think this is a good idea? Share!

Day Three, began as WW3.

2009-04-22T19:57:00.002-04:00

This morning was a disaster on every possible level. BigL woke up in pain and upset and screaming. It took 30 minutes to inch him out of the bed. Then my sister had to help me change the sheets which were soaking wet from peepee. Then we changed BigL - and that took an act of Congress. He remained upset, spitting and grunting and shouting "my arm hurts!" for about the next hour. In the mean time, SuperK's balloon from two days ago, which had lost all floatability, popped. You would have thought he had just witnessed a tragic event. He went ballistic. Screaming, yelling, crying (full fledge sobbing and weeping) and then things got ugly. He started hitting my sister and throwing toys. I'm on the phone trying to find out about a pain medication for BigL and hear my sister shrieking and see SuperK flailing about. It was only 7am at this point. I truly thought if I could find a rewind button, I would have hit it and then pushed pause and let them sleep the entire day. At least the mute button would have been good. I finally got SuperK calmed down and he was only about 45 minutes late for school. Not bad considering I figured he would not make it at all. Then my car would not start for me to go to work, so my sister loaded up BigL and his wacky sling and drove me in. I got to work and was so at peace. No screaming kids, just computers and paperwork. Who'd have ever thought work could be an escape? I love my boys, don't get me wrong, but this week has just been so stressful. BigL got to go visit my sister and mom and SuperK went to school and I went to work. We all got out of the house. Yay for small miracles.

I just hope tomorrow is not a repeat performance!

Today I learned...

2009-04-21T12:25:00.002-04:00

Today I have learned that my son has more language than I thought and is sneakier than I thought. He broke his clavicle Sunday evening, we went to the ER Monday morning and fought an insurance company and lost all by Monday evening. The insurance company won't provide him with any pain meds. Obviously, they've never broken their clavicle.

BigL has been demanding and bossy. He has been such a picky little patient. He actually has told me where he wants to sit, what he wants to drink and eat, and what movies he wants to watch. I'm thrilled! For whatever reason he has been able to be vocal about his wants/needs, more so than normal. He has also learned what noises to make (whines, moans, cries, screams) to get what he wants when he wants it. He knows I feel badly for him and is totally scamming me. I hate to use the word 'manipulative' but he is pushing it that way.

So when all of this pain and suffering is over for BigL - you can bet I am going to take the lessons I've learned and challenge him to grow with them. He has proved to me through facing the unexpected that he CAN do more and is READY to do more.

BigL and SuperK are Twitterific!

2009-04-19T21:13:00.002-04:00

I'm working on getting more efficient with blogging. I hope to set up days of the week to do certain types of posts. I know for certain I will have a recipe day for GFCF recipes! If you have any other suggestions on what you'd like to read about my boys or how to parent a child with autism and sensory issues, please comment!

In the meantime, BigL and SuperK have gotten on twitter. I mean, it is me, but I twitter what they are doing and going through daily. http://www.twitter.com/BigLSuperK

Pray for Madeline's Family

2009-04-14T17:30:00.000-04:00

2:30 PST The Spohr family will lay to rest their darling Maddie. Please pray for them.

Chicken Nugget Recipe

2009-04-01T21:30:00.002-04:00

I found this recipe online and will try it out. Don't remember the site I got it from, but these are their words...I take no credit. (PS - I just use white rice flour, no tapioca)

Quick and easy gfcf chicken nuggets -- just like McDonalds
"I found a recipe for Batter Fried Chicken Nuggets over at the GFCF Recipes Yahoo site at Recipe Circus. (So, no credit to me for the recipe) At first glance, I didn't think it could possibly work. Well, it does. There's no author listed. And, I -- of course -- played with the recipe a little bit. The best part of this recipe is that you can use any flour you like and it turns out pretty much like the nuggets you buy at McDonalds. So, if that's what you're looking for, this is the recipe.

- chicken: I cut up about 3 breasts.
- 1/3 cup gf flour (I used about 80 percent brown rice flour and 20 percent tapioca)
- 1/4 tsp sea salt
- 1 1/2 tsp Heinz vinegar (or other gf brand)
- 1/4 tsp baking soda
- 1/3 cup water

So, you mix the flour and salt in a bowl. Then, combine the vinegar and soda in another small bowl, quickly dumping it in the flour as it reacts. Then, quickly add the water. Whisk well. Let this sit for about 5 minutes. It thickens. Meanwhile, heat some oil in a deep fryer. Mix your chicken pieces in the batter and let them sit in there while the oil heats. When hot, fry until golden brown and cooked through.

Trust me, this works. And it's quick. And it's very simple."

Home Sick...Play Games!

2009-03-19T11:27:00.003-04:00

Learning games! I got an idea from a workshop I attended that utilizes flash cards to help learn. Nothing new right? Well this time I used them for sight words. I wrote the ones BigL is working on down onto index cards. I used magic markers to make them BOLD. As he would read a word correctly, he would get to keep the card. Since it was our first time playing, I gave him a few hints to make him successful and feel good about himself. I incorporated some visual phonics and ASL into it since that helps with his receptive language skills. He did very well and got a majority of them correct. He loved that he got to keep the cards and had something tangible to hang onto. AND, then BigL went on to add his little twist to the game! He took the cards he had won and became the teacher! He would show me the cards and when I got them correct he would cheer me on and say "Good Job!" and give me a high five.

You can use this concept with many different areas, even numbers and ABC's and colors and shapes - it is limitless!

IEP Meetings

2009-03-18T20:09:00.000-04:00

Is it just me as a parent or do all involved parties dread IEP meetings? I love my son's teacher and paras...but for some reason these meetings are never fun. I am going into it with a positive attitude though and knowing BigL has had such a wonderful year and I owe it in great part to his school therapists and his teacher and paras. Kudos!

Wolfsons Children's Hospital "Autism Synposium"

2009-02-24T16:29:00.003-05:00

Let me share my thoughts and feeling on this synmposium. It is bull. They are hiring a man to speak that is the most hated man in the Autism community, Dr. Paul Offit. He thinks parents like me and Joe that do biomedical treatments on our autistic child (and have seen tremendous results) are parasites and grasping for straws. He even wrote a book about it called 'Autisms False Prophets' - in regards to people like Dr. Buckley that treat Big L when no one else would give us answers or hope. If I felt like spending $25 to go and get close enough to him to yell and scream and tell him off, I would. If I could, I would give him the chance to watch MY child for one day and let him see what it is like. If I could I would ask him why he developed the rotavirus vaccine and then sat on the board that votes to put vaccines on schedules and PUT HIS OWN VACCINE on the schedule. He has made over $128 million dollars from this vaccine by the way since it is now on the vaccine schedule. He calls parents like ME a parasite? He needs to go look in a mirror. I am sure talking to someone like him and explaining my side would never work because he is all about money...he does not truly care about children. He does not even TREAT children with autism. He is NOT, I repeat - NOT - an autism expert. I am more knowledgable than he ever will be on the subject because I live it daily. We withdrew from therapy at Wolfson's Childrens Hospital before this came to my attention because they did not have a clue about how to treat my son's Autism issues and Sensory issues. Now this has been brought to my attention by several people who think I'd like to go and learn more...I could learn more about the subject matter simply by asking the tree outside my door. So thank you for letting me share my views. Tell everyone you can this is not a true 'Autism Synposium'. If they truly want to learn about Autism, its causes, and how to treat it - there is a Defeat Autism Now conference coming to Atlanta in April.

http://www.wolfsonchildrens.org/about-us/conferences/autism.html This is the link to the BAD conference.

Good conference you should attend if you actually want to learn how to help your child... http://defeatautismnow.com/Atlanta/Schedule.html

The long week

2009-01-30T20:47:00.002-05:00

This week was so slow! I barely remember Monday...Oh yeah, that was our DAN! dr. appointment for blood results. Here goes...

Monday: Got Big L and Super K's results from Dr. B

Big L needs to up his calcium, up his Gaba, take Vitamin D3, up his 5Htp, and get a nebulizer. Still showing large amounts of Arsenic and Lead in his blood.

Super K, we found out, has Aluminum and Lead and Cadmium (spelling?) in his blood. The Aluminum is easy to figure out where that came from: vaccines all contain aluminum. The others I have no clue. He has to start taking all of Big L supplements and the b12 shots too. He also has to use a nebulizer.

Tuesday: Work and School
Nothing really happened on this day...it drug by slowly and was boring.

Wednesday: Had Friends Over!
Yay! Wednesday we had some friends come over for dinner and a movie. It was fun. We watched Sahara and it was a good flick. The fried dumplings for dinner were so yummo!

Thursday: Work and School
I have to say this was a good work day. We had some good conversation and enlightenment occur. I got to eat lunch with Super K and he enjoyed that :)

Friday: Let's see, that was today, right?
Work went by quickly today since it was basically all one crisis after another and it kept me on my toes. I like those days because I don't get a chance to realize how tired and worn out I am! Then I got home and rushed off to take Big L to his audiology appointment where he got his new ear molds for his hearing aids! Yay! He was a trooper and they fit nicely.

Saturday - what does the future hold?
Farmer's Market! Yay!!! I see boiled peanuts, kettle corn, fresh red peppers and sweet onions in my future!

Sunday - Church day. Both boys have been doing well in their new Children's Church format. The workers are really sensitive to the boys special dietary needs and restrictions (the bright stickers placed on their chest and back help with that).
It should be a refreshing day!

Gerberding coming under fire....again

2009-01-18T08:43:00.001-05:00

Click here to read the full story.

What we've been up to....the short story

2009-01-04T22:36:00.002-05:00

Our Christmas break was calm and uneventful until Dec. 31st.

First...Super K was put on the GFCF diet by our DAN! doctor for his behavior issues and obvious food allergy problems. We've been phasing him in to it. Our entire family is going to be GFCF actually. So far, so good. Thanks to a lovely chef/mom that has been graciously helping. Check her out at http://whattofeedyourkids.blogspot.com

Second...New Years Eve was going to be a nice uneventful evening until Big L busted his head open on our door. Of course our local emergency room had no clue how to handle an upset child with Autism. The nurse was great...we later found out she has a grandchild with Autism. The doctor was more fearful of Big L than he was of her I believe...seriously! They gave him a sedative (which we told them would not work) but they insisted and we caved. Guess what? Didn't work. Should have run home and gotten some melatonin for him instead. Finally we just held him down and the doctor put 5 staples into the back of his tiny little noggin. It was not fun for any of us...especially Big L.

We've been dealing with the aftermath of the sedative since...in the form of some super serious diarhea. It is nasty. Sorry to share so much, but if your child ever has an emergency please just try to remember to shove some melatonin in your purse in case. This has been icky. Big L is still complaining of a headache so I will be calling on his pediatrician tomorrow to just make sure that is normal/or not and go from there. They did not do an xray at the ER, which kind of shocked me but I know nothing about xrays and qualifications for them, so that may be normal.

I'm hoping the GFCF diet helps me with my allergies...they are beyond terrible lately. I'm already on the strongest course of allergy medications available and still reacting to something out there (or in there) so maybe this will be the answer!

I hope everyone has a Happy New Year! Our pastor at church shared today from the book of Matthew chapter 6 where it states to not worry about tomorrow...God will provide for all you need. So I will leave you with that thought...because it sure spoke to me.

:)

DOD Acknowledges Autism as Vaccine Injury

2008-12-07T10:26:00.003-05:00

DOD Acknowledges Autism as Vaccine Injury

Halloween and McDonald's Hash Browns

2008-11-02T14:02:00.002-05:00

We survived Halloween! I had a bag of smarties to trade Big L for the candy he received at the fall festival. He was fine with that since he loves smarties. The fall festival was definately over stimulating to him - but I think it was to us adults as well. He enjoyed wearing his spidey man costume (minus the mask) and did very well at his school Halloween parade.

On a different note...I can tell you for sure that McD's Hashbrowns are NOT gluten/casein free. We (out of guilt) allowed Big L to eat one of them and he has now pooped 6 times in a 24 hour time span and is chewing on everything in site (one of his stims). Not to mention his other behaviors intensified greatly. That is my public service announcement for the day - don't let your kids on the diet eat the hasbrowns.

Christmas List...still working on it

2008-10-29T15:34:00.003-04:00

I had previously posted about how hard it is to find gifts for Big L because of his Autism. His developmental age and his chronological age do not match up and this creates a lot of issues with gifting. One of the other issues is that when I take him to a store to pick things out...he will look like he is enjoying a toy and the minute I touch the toy or acknowledge the toy...he puts it down and is no longer interested. What in the world? If anyone smarter than me knows the answer to this problem, I'd love to hear your thoughts. At this point - everyone is smarter than me on this issue. I've come up with a few ideas...here is my list as it stands now.

Animal Scramble
This is a game similar to Hyper Dash but more on Big L's level - plus it captures his love of animals.

Brown Bear, Panda Bear What Do You See? Game Big L loves these books so I thought maybe that will carry over and he'll enjoy the game and learn at the same time.

I Spy Eagle Eye Game He loves these type of books so again, trying to engage him in play

I am also looking for something like a bean bag toss - but it would need to be simple. If it is too extravagant he will be overwhelmed and likely not play with it.

I'll keep you posted!

This face makes it all better

2008-10-26T23:26:00.002-04:00

Big L has learned that when mommy starts to fume over something he has done...to make the cutest, smiliest face possible. For some reason, when he makes this face, I cannot help but burst into laughter. It thrills me that my son has developed this and realizes that he can get out of trouble. That shows improvement to me! And don't worry - I don't let him get away with it all.

Another quick update...Big L now knows 5 of his sight words at school. I'm a bit confused though, and don't know if anyone out there can help explain this, but how does a child earn "S" for satisfactory on most of his subjects and then earn "below grade level" on all of the same subjects in the same grading period? Isn't that odd? I'd love to understand that, truly.

That's all for now folks, have a great week!

Sarah Palin's Speech

2008-10-25T12:54:00.003-04:00

This was a speech given Friday, October 24th, by Vice Presidential Candidate Governor Sarah Palin.

REMARKS BY GOVERNOR SARAH PALIN ON THE MCCAIN-PALIN COMMITMENT TO CHILDREN WITH SPECIAL NEEDS

For Immediate Release Contact: Press Office

Friday, October 24, 2008

703-650-5550

ARLINGTON, VA -- Governor Sarah Palin today delivered the following remarks as prepared for delivery in Pittsburgh, PA, at 9:00 a.m. ET:

Thank you all very much. I appreciate the hospitality of the people of Pittsburgh, and I'm grateful to all the groups who have joined us here today. The Woodlands Foundation, the Down Syndrome Center at the Children's Hospital of Pittsburgh, Autism-link, the Children's Institute of Pittsburgh: Thank you for coming today. And, above all, thank you for the great work you do for the light and love you bring into so many lives.

John McCain and I have talked about the missions he'd like me to focus on should I become vice president, and our nation's energy independence and government reform are among them. But there is another mission that's especially close to my heart, and that is to help families of children with special needs. And today, we'll talk about three policy proposals that are going to help us fulfill our country's commitment to these children: more choices for parents, fully funding IDEA, and efforts to reform and refocus.

Too often, even in our own day, children with special needs have been set apart and excluded. Too often, state and federal laws add to their challenges, instead of removing barriers and opening new paths of opportunity. Too often, they are made to feel that there is no place for them in the life of our country, that they don't count or have nothing to contribute. This attitude is a grave disservice to these beautiful children, to their families, and to our country -- and I will work to change it.

One of the most wonderful experiences in this campaign has been to see all the families of children with special needs who come out to rallies and events just like this. We have a bond there. We know that children with special needs inspire a special love. You bring your sons and daughters with you, because you are proud of them, as I am of my son.

My little fella sleeps during most of these rallies, even when they get pretty rowdy. He would be amazed to know how many folks come out to see him instead of me.

When I learned that Trig would have special needs, honestly, I had to prepare my heart. At first I was scared, and Todd and I had to ask for strength and understanding. I did a lot of praying for that understanding, and strength, and to see purpose.

And what's been confirmed in me is every child has something to contribute to the world, if we give them that chance. You know that there are the world's standards of perfection, and then there are God's, and these are the final measure. Every child is beautiful before God, and dear to Him for their own sake. And the truest measure of any society is how it treats those who are most vulnerable.

As for our baby boy, Trig, for Todd and me he is only more precious because he is vulnerable. In some ways, I think we stand to learn more from him than he does from us. When we hold Trig and care for him, we don't feel scared anymore. We feel blessed.

Of course, many other families are much further along a similar path -- including my best friend who happens to be my sister, Heather, and her 13-year old son Karcher, who has autism. Heather and I have worked on this for over a decade. Heather is an advocate for children with autism in Alaska. And as governor, I've succeeded in securing additional funding and assistance for students with special needs. By 2011, I will have tripled the funding available to these students.

Heather and I have been blessed with a large, strong family network. Our family helps make sure that Trig and Karcher have what they need. But not everyone is lucky enough to have that strong network of support. And the experiences of those millions of Americans point the way to better policy in the care of children with special needs.

One of the most common experiences is the struggle of parents to find the best and earliest care for their children. The law requires our public schools to serve children with special needs, but often the results fall far short of the service they need. Even worse, parents are left with no other options, except for the few families that can afford private instruction or therapy.

Many of you parents here have been through the drill: You sit down with teachers and counselors to work out the IEP -- an individual education plan for your child. The school may be trying its best, but they're overstretched. They may keep telling you that your child is "progressing well," and no extra services are required. They keep telling you that -- but you know better.

You know that your children are not getting all of the help they need, at a time when they need it most. The parents of children with special needs ask themselves every day if they are doing enough, if they are doing right by their sons and daughters. And when our public school system fails to render help and equal opportunity -- and even prevents parents from seeking it elsewhere that is unacceptable.

In a McCain-Palin administration, we will put the educational choices for special needs children in the right hands their parents'. Under reforms that I will lead as vice president, the parents and caretakers of children with physical or mental disabilities will be able to send that boy or girl to the school of their choice -- public or private.

Under our reforms, federal funding for every special needs child will follow that child. Some states have begun to apply this principle already, as in Florida's McKay Scholarship program. That program allows for choices and a quality of education that should be available to parents in every state, for every child with special needs. This process should be uncomplicated, quick, and effective -- because early education can make all the difference. No barriers of bureaucracy should stand in the way of serving children with special needs.

That's why John and I will direct the Department of Education to clarify the statute administratively. We'll make explicit that when state funds are portable, federal funds are fully portable. We're going to make sure parents have choices and children receive the education they deserve.

Even the best public school teacher or administrator cannot rightfully take the place of a parent in making these choices. The schools feel responsible for the education of many children, but a parent alone is responsible for the life of each child. And in the case of parents of children with disabilities, there are enough challenges as it is, and our children will face more than enough closed doors along the way. When our sons and daughters need better education, more specialized training, and more individual attention, the doors of opportunity should be open.

Like John McCain, I am a believer in providing more school choice for families. The responsibility for the welfare of children rests ultimately with mothers and fathers, and the power to choose should be theirs as well. But this larger debate of public policy should not be permitted to hinder the progress of special-needs students. Where their lives, futures, and happiness are at stake, we should have no agenda except to ease the path they are on. And the best way to do that is to give their parents options.

In a McCain-Palin administration, we will also fully fund the Individuals with Disabilities Education Act. To his great credit, it was President Gerald Ford who signed the legislation that became the IDEA -- establishing new standards of respect and inclusion for young Americans with disabilities. From that day to this, however, the federal government's obligations under the IDEA have not been adequately met. And portions of IDEA funding have actually decreased since 2005.

This is a matter of how we prioritize the money that we spend. We've got a three trillion dollar budget, and Congress spends some 18 billion dollars a year on earmarks for political pet projects. That's more than the shortfall to fully fund the IDEA. And where does a lot of that earmark money end up? It goes to projects having little or nothing to do with the public good -- things like fruit fly research in Paris, France, or a public policy center named for the guy who got the earmark. In our administration, we're going to reform and refocus. We're going to get our federal priorities straight, and fulfill our country's commitment to give every child opportunity and hope in life.

For many parents of children with disabilities, the most valuable thing of all is information. Early identification of a cognitive or other disorder, especially autism, can make a life-changing difference. That's why we're going to strengthen NIH. We're going to work on long-term cures, and in the short-term, we're going to work on giving these families better information.

Once a condition is known, parents need the best and latest information on what to expect and how to respond. This service is also provided for under the IDEA. And we will make sure that every family has a place to go for support and medical guidance. The existing programs and community centers focus on school-age children -- overlooking the need for assistance before school-age.

But it would make a lot more sense for these centers to focus as well on infants and toddlers. This is not only a critical stage for diagnosis; it can also be a crucial time to prepare the family for all that may lie ahead. Families need to know what treatments are most effective, and where they are available, what costs they will face, and where aid can be found, and where they can turn for the advice and support of others in their situation. As Todd and I and Heather know, there's no substitute for the friendship of those who have been where we are now.

The IDEA is also intended to serve teens and young adults with special needs. And here, too, there is an opportunity to reform and extend the reach of federal support under the IDEA. By modernizing a current law, the Vocational Rehabilitation Act, we can better serve students with disabilities in our high schools and community colleges. This will require reform by the states as well. Just as the federal government expects proven results in the progress of other students, we must require results as well in the achievements of students with disabilities. And the result we will expect is simple: that every special-needs student be given a chance to learn the skills to work, and enjoy the freedom to live independently if that is their choice.

As families across America know, the care of special-needs children requires long-term planning, and especially financial planning. A common practice among these families is to establish financial trusts. These are known as special needs trusts, covering years of medical and other costs, and for parents they bring invaluable comfort.

Understandably, then, many families with special-needs children or dependent adults are concerned that our opponent in this election plans to raise taxes on precisely those kinds of financial arrangements. They fear that Senator Obama's tax increase will have serious and harmful consequences -- and they are right. The burden that his plan would impose upon these families is just one more example of how many plans can be disrupted, how many futures can be placed at risk, and how many people can suffer when the power to tax is misused.

Our opponent has an ideological commitment to higher taxes. And though he makes adjustments on his tax plan pronouncements seemingly by the day, his commitment to increase taxes remains the same. John McCain and I have just the opposite commitment. We intend to lower taxes, promote growth, and protect the earnings and savings of American families.

Not long ago, I spent some time at a place in Cleveland called the Michael T. George Center, a beautiful home for adults with Down Syndrome and other disabilities. I met Michael George, too, a boy of five with Down Syndrome. Michael is a healthy, sweet, joy-filled little man -- and I saw in him all the things I wish for Trig in just a few years.

Michael's parents, Tony and Kris George, are advocates for children with special needs in their community. They are thinking far ahead, in their own boy's life and in the lives of others. They named the center after their son. It's a public-private partnership. This welcoming place -- and so many others like it -- shows the good heart of America. They are places of hope. They are the works of people who believe that every life matters, everyone has something to contribute, and every child should have things to look forward to, and achievements to point to with pride and joy. As many of you know better than I, it can be a hard path, and yet all the more joyful and productive when the barriers are overcome.

John McCain and I have a vision in which every child is loved and cherished, and that is the spirit I want to bring to Washington. To the families and caregivers of special-needs children all across this country, I do have a message: For years, you sought to make America a more welcoming place for your sons and daughters. And I pledge to you that if we are elected, you will have a friend and advocate in the White House.

Thank you all, and God bless you.

Mother Warrior

2008-10-06T22:29:00.002-04:00

Do I consider myself a Mother Warrior in this battle against Autism? You bet I do. Who else is going to stand up for my son? Who else is going to educate those around me? I will step up. I will do it. I've been fighting for the past 6 years and 8 months for my son....and I will continue until he is recovered. I will gladly use his story of coming out of his shell and using language to help others. I will continue to learn and grow in my knowledge of all things Autism and Sensory. I will be a Mother Warrior.

www.generationrescue.org

Christmas

2008-10-04T09:26:00.002-04:00

Here's the deal. I realize that it is October and that Christmas is a little over 2 months away. I know that we still have to get through Fall Festival and Thanksgiving. However - this is the time I start thinking about Christmas shopping. For most people with typically developing children deciding on what gift to give your child is fairly simple. For one thing - they are able to tell you what they want and usually give you many, many suggestions. I know because Super K is this way. I am never at a loss of what to give him for Christmas as he has filled me with enough ideas to last for the rest of his life. Big L, though, is not able to tell us what he wants. So my bright idea last year was to take him to the store and see what he was drawn towards. In hindsight, I am not sure why I thought that would work. What happened was that he flitted from toy to toy like a butterfly does flowers during the springtime. I would ask him if he wanted this toy that he seemed completely enamoured with and he would immediately throw it down and move on to the next thing. It was chaotic and gave me no real lead on what to get for Christmas. So that is why during this first weekend of October I am here thinking of what in the world I am going to get him for Christmas. Do I go the route of getting him all sensory toys? Do I get him toys that are found mainly on the toddler aisle of the store - since his fascination seems to lie with pushing buttons and music? I mean, he does like Spiderman - but only in theory. He does not actually play with any of his Spiderman toys....which he got last year for Christmas and only played with for like an hour.

I just don't know how to Christmas shop for my child with Autism. And I have to say that kind of take the joy out a bit. So my task for myself is to find the joy again in other ways. My journey of Christmas this year is to make sure that Big L and I both enjoy the season and don't get caught up in commercialism. This is a big task for me. I'm not materialistic - but I feel that with Super K getting to open gifts that I have to create an equal gift opening opportunity for Big L. He likes that part - the tearing of the paper. So wish me luck and I will keep you posted.

I need the routine!

2008-09-20T23:43:00.002-04:00

Hubby has been doing theater. He has the lead in a play going on at the community theater here. This means for the past month he has been at rehearsals three days a week and we have not seen him very much at all. Big L has been completely off kilter without his daddy here each night to kiss him goodnight and tuck him in. Super K too...his behaviors have shown that he is in major daddy withdrawal. He even got in trouble at school this past week for pinching a child - which is really unlike him to do unless it is to his brother. So the play has now started and that means...no more rehearsals! Yay! Of course it also means that three nights a week Hubby has a play. Even I am starting to feel the effects of being off our routine. It is nice to know that once this is over there will be a break for a while before the next play comes around. I support Hubby in his hobby...it is very good for him to be expressive and do his acting thing. We just all miss him much and are excited that there are only 2 more weeks of theater for now!

Not one of the better days

2008-09-14T19:39:00.002-04:00

Lately, Big L has been doing great. His language is much improved and he is being very helpful around the house.

Today, however, was not one of our better days. Let me back up a bit and first of all say that last night was a later night than normal because we were at my brother's birthday dinner. That put us 3 hours later than normal bedtime and we did not get to give Big L his supplements. He has not had any dietary infractions. He is having a bit of a cold. So there is the background - now for the behaviors. Anxiety. Major meltdown causing over the tiniest little thing anxiety. This had been better overall since adding the supplement 5Htp. However, last night we missed the supplement and today was terrible. Uncooperative. Would not pick up his toys after I asked him (seriously) over 20 times specifically to pick up the stuffed animals. Pitched major fits over being asked to do such a thing! Oh my. Very sensory. He was biting his hands, chewing on clothes, and hitting himself in the head. He needed exactly the pyjama's he wanted to wear, nothing else would do. It had to be the soft CAR pyjamas. Since those were dirty, a meltdown ensued.

Yes...if you followed that correctly then you guessed the majority of my day revolved around Big L's meltdowns. This is something we have not dealt with in a month or so and had almost forgotten how bad it could be.

Super K was not happy with the behaviors either. It meant less attention directed towards him. This is another issue we've had to confront lately. We knew how much attention Big L required, but did not realize we were causing Super K to feel so neglected. His behaviors over the past year however have progressively gotten worse and more intense. So the other day he flat out told us in the middle of a fit that we did not pay him enough attention.

Jaw drop. Guilt. Mega Guilt. Prayer. Much much prayer.

So we've been really trying to give him the attention he deserves and needs lately...consiously making that effort to not ignore him or put him off. It is not easy to juggle the responsibilities that come with a child that has so many special needs and the other people in your life. Our goal is to do better.

So that is our real stuff going on. We go this week coming up for Big L's Glutathione Infusion at the doctor. It always makes such a difference in him that the teacher can even tell the next day. I'll fill you in on what that is later in the week.

Take care.

Adventures in Autism: Education Week Clears Up The Confusion On Palin and Special Ed Funding

2008-09-09T20:20:00.000-04:00

Adventures in Autism: Education Week Clears Up The Confusion On Palin and Special Ed Funding

If you want to know Sarah Palin's stance on Special Education - read this link.

Well, this is different

2008-08-19T19:55:00.002-04:00

How do you evacuate for a Hurricane with special needs children that are on very delicate diets and have many issues to plan for? I'll be sure and keep a list of what works and what doesn't to share. In the meantime - please say a prayer for it to go smoothly. I'm not expecting it to be a bad storm, but those of you with Autism kiddos know that any kind of upheaval is difficult.

Showdown at the Health Department

2008-08-18T16:46:00.002-04:00

Super K's first day of Kindergarten was supposed to be sad yet blissful. It was anything but - more like chaotic. When I arrived at the school they told me he could not enter. The Refusal to Vaccinate form that I had signed at the beginning of the summer with my son's pediatrician evidently doesn't hold water with the local Health Department. Apparently, they did not see fit to call me with this information and just jumped on me with it once I showed up at his classroom. So I had to try and explain to my 5 year old why he couldn't go in. Then one of the higher ups decided to have a heart and let him stay for today but said he could not come back until we had either a medical exemption or a religious exemption.

Ok. So I went to the pediatrician and they wouldn't give a medical exemption - which isn't uncommon....who wants to put their medical license on the line? I wouldn't ask that of them. The Health Department tried to pull this whole story on me where I had to wait a week and a half; come in for counseling; and ask me 20 questions about why I want to claim religious exemption. Hmm. I called my son's DAN! doctor to see if this was true, and guess what? It was all a big whopping lie. I can show up, tell them I want the religious exemption, fill out the paperwork, and leave the same day. No questions asked. To ask what religion you are is evidently a violation of your civil rights - so they can't do that. Armed with this information I did make an appointment (thanks to the higher ups at my job in helping to expedite that) and got in today. I showed up and while they were very friendly about the whole thing - they did try to talk me out of it and innundated me with vaccine safety propoganda. I smiled and said "I still refuse to vaccinate". While I didn't walk out of the office with the forms (the doctor there has to sign off on it and she wasn't there they said) I still consider it to be successful. I stood my ground and let them know they could not bully me!

If you are planning on refusing to vaccinate - here are some forms by state you can look up to claim religious exemption. http://www.unhinderedliving.com/statevaccexemp.html That is pretty much the only way around it in most cases. Again - they are not allowed to ask you what your beliefs are or what church you go to.

Daily Supplements and Meds

2008-08-11T15:27:00.003-04:00

Here is a list of the supplements we give Big L on a daily basis. Some of these he gets more than once a day. Super K gets some of the same ones - but not all. His needs are different and not as severe. I will place the asterick * by the ones he also receives.

Super NuThera*
Calcium Powder
Super Probiotics*
Magnesium Glycinate
Enzyme Complete
Cod Liver Oil*
Selenium
Melatonin
5HTP
GABA

He also takes prescription Nyastatin powder to treat yeast; Zantac for heartburn/reflux issues; and Zyrtec* for seasonal allergies.

Tape Measures and Doodlebops

2008-08-07T16:18:00.005-04:00

Big L has discovered my husband's tape measure. He likes pulling it out about 2-3 feet and then slowly pushing the button to watch it reeled back in. He is very entertained by doing this. Just so you know, Big L is 6.5 years old. His development age is much lower than the chronological age. I say this because some people do not know some of the different things children with autism do.

Big L loves - no, that doesn't capture it - is obsessed with the Doodlebops. If I have to sit through their DVD once more, I seriously may go over the cookoo's nest. The only reason I still let him watch the DVD is because of the smile it puts on his face. That is priceless. A few other shows he will sit through and enjoy are Callilou, Barney, Dora, and Sesame Street.

Super K will also watch these shows with Big L. However, he will also do pretend play about the characters later. He also likes to watch the old Batman movie Super K is very into Superman and Batman and other super heroes. Super K is 5 yrs 4 months old. He is pretty spot on developmentally. He just has melt downs due to transitioning issues and his need to be a sensory seeker and sensory avoider at the same time.

Life is never boring.

Education

2008-08-06T20:42:00.001-04:00

My reason for starting a new blog is to educate. I have found that people are not Autism Aware. I think people now know that Autism exists. What I mean by Autism Aware is to educate on what exactly it is and how it effects the family and the child. I don't think that people fully understand what Autism is; to some degree I think people still picture Dustin Hoffman in "Rain Man". Autism is not a diagnosis where there is a cut and dry symptom list. Say you go see your doctor for a yellowish green runny nose, sinus pressure, sneezing and a sore throat. In my experience, the doctor looks at the ears, nose, throat and listens to your chest. The doctor asks how long you've experienced the symptoms, and then tells you that you have either a) a cold or b) a sinus infection. Then they send you on your way with the appropriate decongestants and possibly an antibiotic. Generally - every one presents the same symptoms of a cold or sinus infection.

This is not so with Autism. Each child is different. One may have symptom "1a" and the next one through the door may not. This is because it is a Spectrum Disorder. It can vary in degrees and symptoms. There are baseline symptoms, to be sure, just like with other illnesses. However, there are other symptoms which vary in degree.

I am not a doctor so if you'd like to know specifics about the diagnosis or what to look for, please see the Autism Society of America's answer to "What are Autism Spectrum Disorders".

My goal is to give you a real view of autism by sharing the experiences of our family. Our family consist of four people: Daddy, Mommy, Big L and Super K. Big L has Autism. Super K has Sensory Processing Disorder. You can read about SPD here.

I also want to let other parents out there going through the challenges of autism to know there is hope. You are not alone.